Monday, 25 January 2016

Positive Behaviour Support - What needs improving?

I worked with and for an Applied Behaviour Analysis charity for a few years.  So it's a subject I know well.  And a method I never use.

As a national trainer and consultant on autism, I advise on behaviour and adaptation.
As an autistic person, I know what it's like to be autistic.  I spend pretty much 24 hrs a day, 7 days a week, 52 weeks a year with autistic people.  Not just 'Asperger syndrome'. (No longer called this in most diagnoses).   Not 'mild'.  Proper autism, in all its forms.

Applied Behaviour Analysis has a form called Positive Behaviour Support.  A catchy new title.  Sounds, well, positive.  Positive is good, after all.  It's got a few add-ons.

Positive Behaviour Support has some good stuff.  And of course any programme is only as good, and kind, as the people delivering it.  Many good, kind people out there.

But, when I look at the autism charities that use Positive Behaviour Support, I see a theme. 
"We see the person, not the condition".  "These are not autistic people, they are people with autism.  People first."  The autism is something separate from being a person.

Autism is seen as something that stops people being human.    Or so we are told.

And autistic communication is seen as a sub-human form of communicating.  Or is it?

Goodness me.   OK, let's try these versions:

We see the person, not the maleness.
We see the person, not the femaleness.
A person with gayness, not a gay person.
A woman with left handedness, not a left handed woman.

A man with Blackness.

Oh my.

Are we starting to understand why many autistic people prefer to be called autistic, and not a 'person with autism'.  We're not ashamed of how we were born.  Having said that, if an individual wants to be called 'person with autism', then that's their right.  That's fine.  It's when it is imposed on us by non-autistic people....that's the problem.

"Stereotypy".  That's the word that Positive Behaviour Support professionals use.  In autistic circles, it's called Stimming.  Repetitive behaviour, such as tapping something, or rocking, or hand-flapping, or foot-moving.  We all do it, us humans.  But if you're autistic, you're not allowed.

Imagine you have a Deaf friend who is a sign language user.  You will notice that they use their whole body to communicate, leaning in and out.  You will notice that they use their hands and arms in repetitive ways that are very different to other people.  And if they are put in situations where they cannot understand what is happening, they become anxious and quite possibly angry.
Now, what is our response to those who are Deaf?  Do we teach them better ways to communicate than that?  Do we teach them to put their hands down and ask using Proper Words instead?  If they get angry, do we treat it as a behavioural problem to be taught out of them?  Well, for some years, of course, people did just that.  And the Deaf community are rightly horrified at how they were treated.

Autistic individuals communicate just fine....with other autistic individuals.  Our communication method is different. Non-autistic people mistake it for 'meaningless repetition', or 'lack of empathy' because they cannot read it.  Which is quite funny really, because non-autistic people often say we are the one who cannot read them.  It works both ways.   Because of our brain wiring set-up, we communicate through touch, through feeling objects, through repeated movement that allows us to re-focus.  "Stimming" is autistic  communication.  It is also how we reconnect with our bodies. It's how we re-centre.  It's also a way in which we learn.  You'd have to have our brain wiring to know why it works. But it does.

Autism is not a 'behavioural condition'.   Our brains take in a vast amount of sensory information.  That's autism.   It's why we struggle to decode social situations fast enough.  Simply too much incoming info.   It's why we need routine - to make sure we balance sensory input.  If we don't, we get an electric overheating in the internal brain wiring. That hurts.  Would you try to avoid an electric overheating to painful levels?  You would, wouldn't you.  Well, so do we.  That's not 'problem behaviour', that's 'survival'.

Autism has advantages.  We are generally ten times more accurate than others.  The first to detect the smell of smoke, the approach of a speeding car, a gas escape.  The first to notice food that has gone off, or a failing computer part as it starts to make a noise. The first to detect a predator in the room (of the human kind).  Honest, loyal individuals....but who live in a world so loud, so busy that our brains cannot process all the incoming information.   Other humans created that hell for us.  And there are ways to deal with sensory overload that do not just focus on making us behave nicely whilst in pain.

Positive Behaviour Support teaches that "stereotypy" is a problem behaviour.  We have to be redirected to more appropriate ways to behave, we are told.  If we do that, we help autistic people to be better people, more normal.  Extensive plans are put in place to get all staff to stop us being ourselves, and using our own form of communication.  Instead, we are taught that we absolutely must only communicate in Approved Ways.  Non-autistic people decide that for us.  We're allowed to choose hobbies, activities and room colours.  That's nice, of course.  We are told this is 'person centred planning'.  Except if we want to choose to be autistic and communicate autistically.  That isn't OK.  We're not allowed that.   

So, you'd go up to a sign language using friend and teach them to be more 'normal'?  I'd bet a fiver that you wouldn't. Well, I'm not a betting person, but you know what I mean.

Can I ask that you don't do that to us?

At this point, I get someone putting their hand up and saying, "Well my family member injures themselves - are you saying I should let them?".   Funnily enough, I've said no such thing.  See above.  Of course if injuries are happening, there needs to be sensible, respectful intervention.  No-one has ever said otherwise.   But that is normally how autistic advocates like me are silenced.  By saying that we don't understand what the professionals mean.  By saying that we don't understand the dangers, or how to help autistic people.   Well, the thing is, we do.  It's what I and so many others of us do - solve situations around autism. Very successfully.  Because we understand what's actually happening, and why. We sort out sensory overload.  We sort out communication misunderstandings.  We respect how autistic people need to balance their days, through personal insight. 

I always ask people to 'spot the autistic manager'.  Who in a charity or organisation is autistic and has real power in there?  Real decision making ability.  Real influence over money and budgets?  Who delivers the training?  Is it done respectfully alongside autistic trainers, or is it professionals talking about us, without us?  I don't mean a token speaker asked to talk about how wonderful the charity was.  I mean people with actual power.

If there are none, why?  Why are they not working alongside us, as fellow professionals?

Ask. And think.  Think about what message you are being given about the competence of autistic individuals.  And question it.

Meantime, learn about autism.  I'd strongly recommend Autism Oxford and the fabulous team I work with for that.  Get in touch. Or any other good training service that uses autistic trainers.

And if you are a Positive Behaviour Support professional or charity chief and reading this, who in your organisation is autistic and has influence and respect?  Do you meet with autistic adults in outside society as equals, and use our communication methods rather than insisting we use yours? Do you meet us in environments that are respectful of our sensory needs?  Lots to learn.  Together, we can indeed build a better world for autistic people.   By respecting one another and our God-given differences.